Cold Sensitivity
Short of staying inside all winter, does anyone else suffer with heat/cold extreme sensitivy. I was diagnosed in August 2018, and each year it seems to get worse. Someone tell me I’m not going crazy. ❤️
Hi Bossable, you are definitely not going crazy! Sadly this is one of the harsh realities that many of our community members face living with NMO. If you don't mind sharing, where are you located and how is the weather treating you? One of our advocates, Aldelly, speaks about temperature sensitivity in this article that she wrote: https://neuromyelitis-optica.net/living/diagnosis-nmo-wisdom. Are you also sensitive to heat?
-Clay (neuromyelitis-optica.net team member)
I live in Arkansas. In the summer I stay in out of the humidity cause it makes me so uncomfortable. In the winter I freeze. I feel like there a few months out of the year I can enjoy outside weather without suffering. This is my 4th winter since being diagnosed and I’ve gotten smart with layering, warm slippers, terry robe, and I try to wear shirts and sweaters for those moments I get overheated. My temperature gauge just doesn’t work anymore. ☹️🤷🏻♀️
Haven't experienced this yet but having car camped some weekends last winter I discovered a few things aside from layering that kept me warm during my adventures.
1. Portable hot water bottle that you plug in for 20+ minutes in order to heat it. Stays warm 6+ hours for me. I used it when I did Plex and it kept me from freezing! Mine is like a muff and I can slip both hands into it. It's cloth, kind of fuzzy on one side. I had one when living in a tiny house and loved it so when it stopped working I found a similar one on Amazon and like it as much although I had to put water in this one before using it. I also found that I had to experiment with the plug in time at first.
2. Fur and down coats. My thick down one is sweaty in stores and forsleeping in but my thin one is just right in stores and sleeping in. The mink I just use as a lap blanket.
3. Cashmere and leather mittens!
4. Hats ofc and real fur headbands if not adverse to real fur. Mine is mink and super warm. All my furs were Inherited from my mother.
5. Hand warmers which come in the shake to activate kind and the rechargeable kind though I never tried the latter. I put them in pockets or in my larger winter boots.
6. Battery operated vests and socks but I haven't tried these.
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Happy Thursday NMO Warriors! Thank you for reaching out. As Clay has mentioned, I encourage you to read Aldelly's article on heat/cold sensitivity https://neuromyelitis-optica.net/living/diagnosis-nmo-wisdom to find out tips and trick on maintaining your temperature. I was diagnosed with NMOSD February 2020 and unfortunately, the attack was not so kind to me. It really took a toll on my body and I ended up with major nerve damage as a result of the NMO attacking my brainstem. I realized from then until now that heat and cold sensitivity plays a major role in NMOSD. As a matter of fact, it can cause a flare that may or may not be reversible so it's important to maintain adequate balance with your body temperature as much as you possibly can. Each person with NMOSD has a difference tolerance so you will know what's right for you. I just recently went through a heat related episode and passed out. Fortunately I was ok and it did not cause a prolonged flare.
